Ann S
02-14-2001, 08:55 PM
Hi,
I've been newly dx with Raynauds, Rheumatoid Arthritis, and Lupus. (They're doing more blood tests too) I've also had IBS and carpal tunnel for about 30yrs. No, I'm not trying to win the hypochondriac award of the year! I'm so overwhelmed by all these new dxs, that I'm having trouble sorting out the symptoms, much less finding the energy to do all the research(plus an old slow computor) and handle all the new emotions involved in learning to deal with it. I'm also trying to keep my job. In the research I've done so far, I just find it so amazing how all these things are interconnected. I've learned alot about IBS, from research and health boards and never once heard of the connection to Lupus. (If anyone has any questions about the IBS, I might be able to help there.) Anyway, I plan on doing more research on all these new things I have, but for now, could someone give me advice on meds? I know everyone is different and reacts differently to stuff, but for those of you that are 'old timers' to the board, what's the gerneral concensus? Also, if I can handle the pain, I want to take as little as possible and only on an as needed basis, but I don't want to avoid meds that help slow the progression of the disease. Can anyone, who's having a good day, help me sort these out? Also, I've heard you guys on the board refer to the 'right treatment' and 'diet'. In your opinion, what are these? As you can see by the length of my post, this is one of my better days, hope yours is too! Thanks, Ann
[This message has been edited by Ann S (edited 02-15-2001).]
I've been newly dx with Raynauds, Rheumatoid Arthritis, and Lupus. (They're doing more blood tests too) I've also had IBS and carpal tunnel for about 30yrs. No, I'm not trying to win the hypochondriac award of the year! I'm so overwhelmed by all these new dxs, that I'm having trouble sorting out the symptoms, much less finding the energy to do all the research(plus an old slow computor) and handle all the new emotions involved in learning to deal with it. I'm also trying to keep my job. In the research I've done so far, I just find it so amazing how all these things are interconnected. I've learned alot about IBS, from research and health boards and never once heard of the connection to Lupus. (If anyone has any questions about the IBS, I might be able to help there.) Anyway, I plan on doing more research on all these new things I have, but for now, could someone give me advice on meds? I know everyone is different and reacts differently to stuff, but for those of you that are 'old timers' to the board, what's the gerneral concensus? Also, if I can handle the pain, I want to take as little as possible and only on an as needed basis, but I don't want to avoid meds that help slow the progression of the disease. Can anyone, who's having a good day, help me sort these out? Also, I've heard you guys on the board refer to the 'right treatment' and 'diet'. In your opinion, what are these? As you can see by the length of my post, this is one of my better days, hope yours is too! Thanks, Ann
[This message has been edited by Ann S (edited 02-15-2001).]
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Jeri
02-17-2001, 03:42 PM
Ann, I am doing everything backward. I ansered your subsequent posts before seeing your first.
OF COURSE you are overwhelmed. Actually, be very gentle with yourself, because the realization of the diseases will continue to increase and wash over you for a few mosre days. Then you'll settle in a bit. I am still real new to this, that's the only reason I feel any competence at all to respond to your plea for "advice."
I found no need for pain medication as in narcotics, etc.- although right before I was diagnosed I was in one AWFUL flare (as the flare-up in symptoms are called) and I used whatever narcotics we had to stop the chest pain. It didn't help anyway.
The antiinflammatories that you'll be prescribed as well as the other drugs will begin to control the symptoms as well as contnrol the advance of the diseases.
I was started on prednisone (that works almost immediately to reduce the inflammatory process) and plaquenil (an antimilarial that works great on lupus). the prednisone began to works almost immediately, the plaquenil worked withoin 3 wks and suddenly I was pain-free and mobile again. From August to dec we worked on getting the steroids (prednisone) down to 5mg/day from 20 -a safer level and succeeded until Dec- when I kept flaring. In Jan she added methotrexate 7.5mg/once a wk. I am doing fine on the methotrexate (it's very stong and takes 5wks-3mos to work). I am in my 4th wk and believe that I am regain some strength and mobility.
I continue to work, but this takes a bit of a toll on my brain. I am honest with my co-workers and the administration. I have the perfect job and for now don't have to worry about job security. That is truly a blessing. I found that I had to drop my pride and independence immediately when it came to family. they are very supportive, but needed to be included. They got pretty confrontational when I wanted to keep this all in. Not all families can handle this. My husband had a problem at first because he (like all sweet hubbies) wanted this to go away and for me to be well again. he's had some major hurdles to jump, but he's doing very well for a sweet 64 yr old. :-)
ask away, Ann, and know that we'll do ou best to support you.
Jeri
OF COURSE you are overwhelmed. Actually, be very gentle with yourself, because the realization of the diseases will continue to increase and wash over you for a few mosre days. Then you'll settle in a bit. I am still real new to this, that's the only reason I feel any competence at all to respond to your plea for "advice."
I found no need for pain medication as in narcotics, etc.- although right before I was diagnosed I was in one AWFUL flare (as the flare-up in symptoms are called) and I used whatever narcotics we had to stop the chest pain. It didn't help anyway.
The antiinflammatories that you'll be prescribed as well as the other drugs will begin to control the symptoms as well as contnrol the advance of the diseases.
I was started on prednisone (that works almost immediately to reduce the inflammatory process) and plaquenil (an antimilarial that works great on lupus). the prednisone began to works almost immediately, the plaquenil worked withoin 3 wks and suddenly I was pain-free and mobile again. From August to dec we worked on getting the steroids (prednisone) down to 5mg/day from 20 -a safer level and succeeded until Dec- when I kept flaring. In Jan she added methotrexate 7.5mg/once a wk. I am doing fine on the methotrexate (it's very stong and takes 5wks-3mos to work). I am in my 4th wk and believe that I am regain some strength and mobility.
I continue to work, but this takes a bit of a toll on my brain. I am honest with my co-workers and the administration. I have the perfect job and for now don't have to worry about job security. That is truly a blessing. I found that I had to drop my pride and independence immediately when it came to family. they are very supportive, but needed to be included. They got pretty confrontational when I wanted to keep this all in. Not all families can handle this. My husband had a problem at first because he (like all sweet hubbies) wanted this to go away and for me to be well again. he's had some major hurdles to jump, but he's doing very well for a sweet 64 yr old. :-)
ask away, Ann, and know that we'll do ou best to support you.
Jeri
tina ballerina
02-18-2001, 02:56 PM
hi anne, We all have the same emotions and fear of the unknown, I was the same. There are so many things which can be related to Lupus, I was dx almost 7 years ago with kidney, skin, thyroid, joint problems. To my horror in the past few months i have been told i now have liver involvment, the worst pain in the world and have just seen a Liver specialist who is running all sorts of tests.
The fear never goes away but you learn to deal with it and with support from family and friends ( and people like us) we can help
you with dx symtoms. Good luck
The fear never goes away but you learn to deal with it and with support from family and friends ( and people like us) we can help
you with dx symtoms. Good luck
Ann S
02-18-2001, 10:45 PM
Thanks to both of you for the responses. I went to a family wedding yesterday and some of the responses there were tough to deal with....well-meant ignorance of the diseases, with easy sure-fire cures!
Do any of you have mind blurps?.....like putting the milk in the pantry instead of the frig, opening the second garage door instead of closing the first one, (and not even realizing you did it) etc. Is this a symptom or just caused by the initial stress and emotions of getting hit with all these new diseases? Also, are the sores in my mouth (mine don't hurt) and on my face from the lupus? Do any of you get a burning type pain in your legs, mostly behind the knees and calves? Finally, what's the 'right diet' some of you referred to?
I've only started Vioxx this week & had to have ny husband pick me up from work cause I was light headed and tingly all over. Dr. said to cut the pill in half & haven't had anymore problems. I thought I would wait to talk to the Dr. before I started any more of the prescriptions (chicken, I guess). I've heard such horror stories about the prednesone! Have any of you tried Celebrex?
I kind of jump from feeling sorry for myself at one moment, to thinking I'm just imagining some of the symptoms. I guess I just haven't accepted it yet.
Thanks again for taking the time. Hope you all have a no-flare week. Ann
Do any of you have mind blurps?.....like putting the milk in the pantry instead of the frig, opening the second garage door instead of closing the first one, (and not even realizing you did it) etc. Is this a symptom or just caused by the initial stress and emotions of getting hit with all these new diseases? Also, are the sores in my mouth (mine don't hurt) and on my face from the lupus? Do any of you get a burning type pain in your legs, mostly behind the knees and calves? Finally, what's the 'right diet' some of you referred to?
I've only started Vioxx this week & had to have ny husband pick me up from work cause I was light headed and tingly all over. Dr. said to cut the pill in half & haven't had anymore problems. I thought I would wait to talk to the Dr. before I started any more of the prescriptions (chicken, I guess). I've heard such horror stories about the prednesone! Have any of you tried Celebrex?
I kind of jump from feeling sorry for myself at one moment, to thinking I'm just imagining some of the symptoms. I guess I just haven't accepted it yet.
Thanks again for taking the time. Hope you all have a no-flare week. Ann
Jeri
02-21-2001, 02:15 AM
Ann, we're in this together! I am pretty calm and accepting about this, but find that mu condition changes so constantly that I do lose focus sometimes. that's where my faith really sustains and center me.
The brain stuff is the most unsettling 'cause it could mean safety issues or could mean my job. I have a lot of scatterbrain stuff going on as you described. I also forget names- that's a real problems at work. I had a difficult encounter one day when I recognized 2 detectives who came in with a case. By the time I was ready to write their names down, I could only remember one's name. I finally had to ask the other's name and he started to really give me a hard time ribbing me 'cause he didn't believe that I didn't know his name. I finally had to swallow my pride, tell him that I had lupus and that memory loss , for me, was part of the disease. He was pretty embarassed, but got over it quickly and offered to pray for me.
I can honestly say that lupus is humbling me- I need it too. :-) (you can tell from my typos how my brain is working- not very well haha)
I've been on Celebrex for a couple of years. She just upped the dosage in Oct to two 200 mg/caps day. She gave me some vioxx samples to take if I wanted to change. I haven't tried them yet- don't know if I'll change after what you wnet thru. I don't have a clue if the celebrex works cause of all the other stuff that I am taking.
jeri
The brain stuff is the most unsettling 'cause it could mean safety issues or could mean my job. I have a lot of scatterbrain stuff going on as you described. I also forget names- that's a real problems at work. I had a difficult encounter one day when I recognized 2 detectives who came in with a case. By the time I was ready to write their names down, I could only remember one's name. I finally had to ask the other's name and he started to really give me a hard time ribbing me 'cause he didn't believe that I didn't know his name. I finally had to swallow my pride, tell him that I had lupus and that memory loss , for me, was part of the disease. He was pretty embarassed, but got over it quickly and offered to pray for me.
I can honestly say that lupus is humbling me- I need it too. :-) (you can tell from my typos how my brain is working- not very well haha)
I've been on Celebrex for a couple of years. She just upped the dosage in Oct to two 200 mg/caps day. She gave me some vioxx samples to take if I wanted to change. I haven't tried them yet- don't know if I'll change after what you wnet thru. I don't have a clue if the celebrex works cause of all the other stuff that I am taking.
jeri
Ann S
02-22-2001, 09:39 PM
Jeri,
I cut the pills in half and haven't had a problem with that again. I think that's just a pain/anti-imflammatory med. It doesn't do any thng for the progression, what about celebrex?
Someone mentioned itchy palms when coming off the pred. and also water retention. I have both of them & I've never been on it yet.(Dr. gave me the rx but I didn't start it yet. Any ideas? What about dry mouth?
What are some of the symptoms of Sjogren's?
I have another dilemma that I could use some advice about. I've told the my kids (19 & 22) what dx's I have, but I don't think they have a clue about the seriousness. I don't think I really want them to fully know cause all their worrying isn't going to help me any, except to make me feel bad for them. But, I sometimes get the feeling that they're mad or fed up with my excuses when I don't want to do something or plan ahead. This really makes me feel bad and a little mad too. Neither way feels good. Help
We really need to get this down to one post cause I keep writing in one, and then go to the next and find out that the questions I just asked, you answered in the other one. I think we're creating our own confusion.
Thanks, Ann
[This message has been edited by Ann S (edited 02-22-2001).]
I cut the pills in half and haven't had a problem with that again. I think that's just a pain/anti-imflammatory med. It doesn't do any thng for the progression, what about celebrex?
Someone mentioned itchy palms when coming off the pred. and also water retention. I have both of them & I've never been on it yet.(Dr. gave me the rx but I didn't start it yet. Any ideas? What about dry mouth?
What are some of the symptoms of Sjogren's?
I have another dilemma that I could use some advice about. I've told the my kids (19 & 22) what dx's I have, but I don't think they have a clue about the seriousness. I don't think I really want them to fully know cause all their worrying isn't going to help me any, except to make me feel bad for them. But, I sometimes get the feeling that they're mad or fed up with my excuses when I don't want to do something or plan ahead. This really makes me feel bad and a little mad too. Neither way feels good. Help
We really need to get this down to one post cause I keep writing in one, and then go to the next and find out that the questions I just asked, you answered in the other one. I think we're creating our own confusion.
Thanks, Ann
[This message has been edited by Ann S (edited 02-22-2001).]
Jeri
02-23-2001, 10:13 PM
Hi Ann, You're right, we need to get this to a nex box or single topic and stay there. I am not sure what's best, cause I am new to chatrooms and boards. I'll follow your lead.
The celebrex doen't slow progression, it is anti-inflammatory and easier on the stomach. It's pretty good with oasteoarthritis, but will try going off of it once I get settled into the methotrexate and get the prednisone redused to less than 7.5mg/day. Doc said below 7.5 there are almost no bad long-term effect. The water retention I have and it's caused me to stop losing the weight I need to lose to keep the diabetes in tight control. I'm kinda on a see-saw right now, but I am not in a major flare- so I can live with the juggling for now. I haven't read or heard anything about the itchy palms, but could it be linked to discocid (skin) lupus or psoriasis?
The only sign I had of the sjogrens was irritated dry eyes. A few years ago I had trouble wearing my contacts, so I stopped wearing them and went back to my glasses. Mostly I wore them for outdoor or beach time, so I figured it was the sun. When I came back from my Mom's funeral in Calif, my eyes were giving me fits- they were so scratchy that I thought I needed to wash them out, so I got some eyewash and the next morning I woke up with my right eyelid swelled up on my cheek! yuck! I looked like cyclops. it turns out that the irritation was the sjogrens and the swelling was an allergic reaction to the preservative in the eyewash. I don't have the dry-mouth symptom curiously enough- at least I don't notice it. I went on salagen for a while to relubricate the eyes, but it caused my saliva to gush, my nose to run and unrine to be produced at an amazing rate. haha It's expensive and has side effects, so I just use some artificial tears my opthamologist give me to use whenever my eyes get sticky or itchy feeling.
Now to your most important question- the kids. Mine are big and sometimes over-imvolved and protective, but it's what they want. Until I had a diagnosis to explain to them and booklets from the arthitis foundation- they really didn't have a clue. Well, the girls did, cause they went on the internet and got freaked out. the guys just want to believe that Mom will be around forever. There is a LOT of wishful thinking that goes on- we do it too. All you can do is provide the information- learn all you can on your own, swallow your pride and tell them what you need from them. They'll eventually tell you what they need. It may be very difficult at first because what they think they need: you well and competent and not complicating their lives (haha in a perfect world) is not something that you can provide. It might also help to get the booklet I found on how to deal with persons with chronis invisible diseases. (darn, I can't find the booklet to give you the title, but you might try searching under invisible disabilty)I am sure that there are other booklets out there better than this one, but it is direct and to the point. Even if they don't read it, it may give you some dialogue to use in discussing what you are going through.
It is vital that you not feel guilty or aplogetic for these diseases. you didn't ask for them, don't want them, but wouldn't wish them on your worst enemy, either. Once the kids see that you are rising above and not letting this destroy you, they'll rally around you and out of any self-centeredness they may be harboring. It's important that they see the real you, this is a scary time- just getting used to all the changes is enough- then add prognosis and complications that threaten you. It's a lot to handle. We can't go this alone.
Even my 8 1/2 yr old grand daughter can see how Jesus is using this trial to shape me and grow me. She compares her latex allergy to my lupus- we now have a very special bond thru these diabilities and work to keep each other encouraged thru it. And we rely on Him for our strength.( on most days it's 98.5% Hm and the remaining 1.5% my whining, kicking and screaming. haha)
I am so glad that it is the weekend that I almost can't stand it. Been a looooonnnng week.
Be gentle to yourself, Ann, you deserve it!
jeri
The celebrex doen't slow progression, it is anti-inflammatory and easier on the stomach. It's pretty good with oasteoarthritis, but will try going off of it once I get settled into the methotrexate and get the prednisone redused to less than 7.5mg/day. Doc said below 7.5 there are almost no bad long-term effect. The water retention I have and it's caused me to stop losing the weight I need to lose to keep the diabetes in tight control. I'm kinda on a see-saw right now, but I am not in a major flare- so I can live with the juggling for now. I haven't read or heard anything about the itchy palms, but could it be linked to discocid (skin) lupus or psoriasis?
The only sign I had of the sjogrens was irritated dry eyes. A few years ago I had trouble wearing my contacts, so I stopped wearing them and went back to my glasses. Mostly I wore them for outdoor or beach time, so I figured it was the sun. When I came back from my Mom's funeral in Calif, my eyes were giving me fits- they were so scratchy that I thought I needed to wash them out, so I got some eyewash and the next morning I woke up with my right eyelid swelled up on my cheek! yuck! I looked like cyclops. it turns out that the irritation was the sjogrens and the swelling was an allergic reaction to the preservative in the eyewash. I don't have the dry-mouth symptom curiously enough- at least I don't notice it. I went on salagen for a while to relubricate the eyes, but it caused my saliva to gush, my nose to run and unrine to be produced at an amazing rate. haha It's expensive and has side effects, so I just use some artificial tears my opthamologist give me to use whenever my eyes get sticky or itchy feeling.
Now to your most important question- the kids. Mine are big and sometimes over-imvolved and protective, but it's what they want. Until I had a diagnosis to explain to them and booklets from the arthitis foundation- they really didn't have a clue. Well, the girls did, cause they went on the internet and got freaked out. the guys just want to believe that Mom will be around forever. There is a LOT of wishful thinking that goes on- we do it too. All you can do is provide the information- learn all you can on your own, swallow your pride and tell them what you need from them. They'll eventually tell you what they need. It may be very difficult at first because what they think they need: you well and competent and not complicating their lives (haha in a perfect world) is not something that you can provide. It might also help to get the booklet I found on how to deal with persons with chronis invisible diseases. (darn, I can't find the booklet to give you the title, but you might try searching under invisible disabilty)I am sure that there are other booklets out there better than this one, but it is direct and to the point. Even if they don't read it, it may give you some dialogue to use in discussing what you are going through.
It is vital that you not feel guilty or aplogetic for these diseases. you didn't ask for them, don't want them, but wouldn't wish them on your worst enemy, either. Once the kids see that you are rising above and not letting this destroy you, they'll rally around you and out of any self-centeredness they may be harboring. It's important that they see the real you, this is a scary time- just getting used to all the changes is enough- then add prognosis and complications that threaten you. It's a lot to handle. We can't go this alone.
Even my 8 1/2 yr old grand daughter can see how Jesus is using this trial to shape me and grow me. She compares her latex allergy to my lupus- we now have a very special bond thru these diabilities and work to keep each other encouraged thru it. And we rely on Him for our strength.( on most days it's 98.5% Hm and the remaining 1.5% my whining, kicking and screaming. haha)
I am so glad that it is the weekend that I almost can't stand it. Been a looooonnnng week.
Be gentle to yourself, Ann, you deserve it!
jeri
Jeri
02-23-2001, 10:22 PM
ps Ann,
yes the knee and calf tightness remains and I was having a lot of pain behind my knees. I never discussed it with my rheumie cause I was focused on other things. makes absolute sense to me cause when I was losing weight- it disappeared and when prednisone was upped and I started retaining water, the tightness and discomfort came back. I THOUGHT that was what it was. Thanks for confirming it!
jeri
have you tried joining rockingbabes (lupus group) at egroups.com? faster response to posts- good group; I just stumbled on them and you can private email members if you want
jeri
yes the knee and calf tightness remains and I was having a lot of pain behind my knees. I never discussed it with my rheumie cause I was focused on other things. makes absolute sense to me cause when I was losing weight- it disappeared and when prednisone was upped and I started retaining water, the tightness and discomfort came back. I THOUGHT that was what it was. Thanks for confirming it!
jeri
have you tried joining rockingbabes (lupus group) at egroups.com? faster response to posts- good group; I just stumbled on them and you can private email members if you want
jeri
Jeri
02-23-2001, 10:44 PM
for those of you struggling with how the family/friends are handling your disease(s), you might enjoy reading this article found at: http://www.paintracking.com/fms04.html
the focus is fibromyalgia, but really is applicable to any chronic condition.
g'night for now
jeri
the focus is fibromyalgia, but really is applicable to any chronic condition.
g'night for now
jeri
Kathryn
02-23-2001, 11:59 PM
That was a very good read. I appreciated it and have also passed it along to someone else.
Kathryn
Kathryn
Ann S
02-24-2001, 12:42 AM
Jeri,
You are such a sweetie to take all this time, THANKS! About the pain behind the knees etc., I've had it for years, it's just increased a lot lately.....but, I haven't started the meds. Did you have it BEFORE the meds too?
I'm so confused....I was at the rheumy today(2nd visit) and he said the last round of tests were good. I've come to realize that he's a great listener, only he never tells me what he thinks. I think I could lead him into any treatment program I wanted. He said my white blood cells were below 4600, sed rate normal, urinalysis o.k. and something like "C reactive for RA" was fine. Greek to me. I asked if his diagnosis was different now then, and he said the tests don't always show it, and he thinks it means I have a good chance of never progressing to the real serious RA. I totally forgot to ask about the Lupus! I'm going to start the adalat for the Raynauds to mostly see if the improved circulation will make my hads and fingers less sore, he said maybe. I said I didn't want to take the prednesone cause of the water retention only making my problem worse, he said o.k. I also have a lot of pain above my wrist. He looked at it and didn't say anything. I think I'll stay with him till summer and then go to Rochester Mayo to have everything checked out. (They helped me alot with the IBS) One of the few advantages of living in Mn. I hope that's not waiting too long since they say your chances are better if you catch it early. Any opinion? I really want to believe that things are better than I first thought, but I'm scared that maybe he isn't very good.
Now, about the eyes. Mine got really bad about 15yrs ago and the opthomologist gave me about 5 prescriptions that never helped. (Do you think I could've had something back then?) Anyway, my reg. eye dr. told me to use Lacri-lube at night, an over the counter ointment. I didn't use it much tho cause I didn't like the gooey feeling. He also told me to throw away all my other drops and use "Tears Naturale II". I've used them daily ever since. My daughter also uses them with her contacts cause she seemed to have an allergic reaction to so many others.
Are you on plaquenil? If you are, how were the side effects for you?
Everybody keeps telling me about all these good things to read, and I know I should, but where do you 'superwomen' find the time? It seems like I don't have any personal time just to zone out, except for the time on the computer (which helps me learn). It took me all week to get my house ready for a bunch of friends my daughter was bringing home to go snowmobiling for the week-end. (She did say she would do the prep work, not me, but...). Anyway, major blizzard supposed to be coming, so they're not!
Jeri, as you may have noticed, I keep avoiding the faith thing. I envy you yours!!! I feel guilty going to God only when things are bad. There was always a lot of guilt connected with religion in my upbringing. Maybe it's time I go talk it out with the Pastor.
Sorry if I sound whiney, it's late and I'm tired. Besides, what you guys put up with it, my family doesn't have to. HaHa! Thanks again, Ann
You are such a sweetie to take all this time, THANKS! About the pain behind the knees etc., I've had it for years, it's just increased a lot lately.....but, I haven't started the meds. Did you have it BEFORE the meds too?
I'm so confused....I was at the rheumy today(2nd visit) and he said the last round of tests were good. I've come to realize that he's a great listener, only he never tells me what he thinks. I think I could lead him into any treatment program I wanted. He said my white blood cells were below 4600, sed rate normal, urinalysis o.k. and something like "C reactive for RA" was fine. Greek to me. I asked if his diagnosis was different now then, and he said the tests don't always show it, and he thinks it means I have a good chance of never progressing to the real serious RA. I totally forgot to ask about the Lupus! I'm going to start the adalat for the Raynauds to mostly see if the improved circulation will make my hads and fingers less sore, he said maybe. I said I didn't want to take the prednesone cause of the water retention only making my problem worse, he said o.k. I also have a lot of pain above my wrist. He looked at it and didn't say anything. I think I'll stay with him till summer and then go to Rochester Mayo to have everything checked out. (They helped me alot with the IBS) One of the few advantages of living in Mn. I hope that's not waiting too long since they say your chances are better if you catch it early. Any opinion? I really want to believe that things are better than I first thought, but I'm scared that maybe he isn't very good.
Now, about the eyes. Mine got really bad about 15yrs ago and the opthomologist gave me about 5 prescriptions that never helped. (Do you think I could've had something back then?) Anyway, my reg. eye dr. told me to use Lacri-lube at night, an over the counter ointment. I didn't use it much tho cause I didn't like the gooey feeling. He also told me to throw away all my other drops and use "Tears Naturale II". I've used them daily ever since. My daughter also uses them with her contacts cause she seemed to have an allergic reaction to so many others.
Are you on plaquenil? If you are, how were the side effects for you?
Everybody keeps telling me about all these good things to read, and I know I should, but where do you 'superwomen' find the time? It seems like I don't have any personal time just to zone out, except for the time on the computer (which helps me learn). It took me all week to get my house ready for a bunch of friends my daughter was bringing home to go snowmobiling for the week-end. (She did say she would do the prep work, not me, but...). Anyway, major blizzard supposed to be coming, so they're not!
Jeri, as you may have noticed, I keep avoiding the faith thing. I envy you yours!!! I feel guilty going to God only when things are bad. There was always a lot of guilt connected with religion in my upbringing. Maybe it's time I go talk it out with the Pastor.
Sorry if I sound whiney, it's late and I'm tired. Besides, what you guys put up with it, my family doesn't have to. HaHa! Thanks again, Ann
Jeri
02-24-2001, 02:39 AM
Ann, you aren't being whiney- it's called venting and it's a way of "dealing with it"- and you ARE deaLing with this. You are allowed to be unhappy with this, you are allowed to not want to accept a negative outcome, you are allowed not to have to handle this on your own, you are allowed to seek others.
Let me help remove one stumbling block: "the faith thing." Stand by- cause I am awake and talkative. :-) I bubble over sometimes and can't contain myself 'cause I KNOW that I couldn't get thru this mess without Jesus. I don't mean church or anything organized- that is something you come to seek on your own at His direction. I was down and out in fear in 1971- about to have breast biopsies for cancer when my twin babies were 4 mos old and I had 3 other children to raise. I was scared out of my wits at what would happen to those children if I had cancer. I read a book about the Bible and was led to ask Him to be real and personal to me. I had the greatest calm come over me- and honestly feared no longer what was about to happen. I knew that He was in control. Nonetheless, even tho I came thru just fine, I lived an awful life by His standards until about 4-5 yrs ago. I sudddenly heard Him call me to obey Him. I know it sounds goofy as all get out- but I was led back to being obedient to His word in the Bible. He has so richly blessed me with His protection and comforting. You see, in our weakness we see how perfect He is. It's not until we run out of ways to do things ourselves, unsuccessfully, that we begin to look away from ourselves and to Him. I can't do anything BUT share with anyone else who is hurting or confused or feeling very alone- that He alone can calm the storms by speaking. I have no idea why He allows this desease in my body. It really doesn't matter. I don't wish it on anyone else and He is with me every step of the way. I don't want to offend you or put you off or try to "convert" you- I just know what He promises all of us- His forgiveness, His truth, His comforting and His love. All we have to do is ask. He is what I cling onto when it's rough. Would your father want you to stay away 'cause some group of people had mad you feel guilty and ashamed? Not God, He's waiting to welcome you back into His loving embrace (in spite of the guilt-making humans) :-) He's where it's at! I promise- no more evangelizing!
As far as what everyone appears to have lots of: time to read. Nahhhhhhhhhhh. Well, actually I have a peach of a job that allows me to do just about what I want during slack-time, and on my shifts there's plenty of that. Besides, my kids are grown and live close by; if I need anything I can ask. My husband is wonderfully supportive and is retired. he has taken a major burden (the house) off my shoulders. So I have time to read books- and I'm a "fast skimmer."
Just reading what you wrote made me think instantly "Too much". It seems like you are trying to do (or doing) too much. I just learned about the FM this week- and that's what I am struggling with: not allowing enough priority for adequate rest. With all that is going on in my body, I don't allow for the tissues to heal naturally. It seems like there are always 10 more things to do & if I feel just a little bit better today I'd better tackle them before I feel any worse. Sound familiar? It's a trap- cause if you overdo, you lose precious ground that you have gained. I call all this opposite-world. Everything is opposite to the way we think it should be. Sorta like " If I am a good girl all this will be okay." Then we are trapped into thinking that we have control and if we get sicker then it's all our own fault." WRONG! There is a balance and I am beginning to feel that if we calm down and give up the panic, we will eventually begin to learn to sway with the tightrope and find the balancing easier.
You may never find a lot of time for reading- but while you enjoy your computer time- you may be learning and reading, too. It's hard to verify what someone tells you if you don't have any other sources to check it against. The other sources don't have to be books, tho- reputable medical and health foundation sites online are every bit as legitimate (maybe moreso) as the printed word. I'll printnout your last post and try to sort out the labs with the book I have and get back to you on them. There are a couple of tests that are good predictors of whether your kidneys are likely to be involved on down the line.
Like you, I have gained so much knowledge from these boards. I think the bond is that we are real and share experiences and our vocabulary is so accurate. The exposure to each other is so significant, because we are available and understanding, and encourage venting. Our medical team-players only have about 15 minutes to assist us. They do a great job, but these diseases require more personal support. That's how we function for each other.
I haven't noticed any side effects from plaquenil except positive ones- and they started about 3 wks after I began taking it. I, too, am very leary of the effects of prednisone, but I trust my rheumie that her first concern was to get me feeling better- and by that she meant pain-free. She accomplished that for a while. Now I have some criteria for judging whether I am better-or-worse each day.
Diagnosing this stuff early is a great benefit as the medication heads off further complications. heads-off, not prevents nor cures. And I believe that I can be in that 80-90% who don't have major organ involvement. someone has to be. Well, if not me, then hopefully someone I know. :-)
You mentioned hurting above your wrist. That reminded me that I had been having a lot of hip pain and was concerned because lupus as well as some of the meds can cause bone death (necrosis). The doc took my complaint seriously and had it xrayed. I have trocanteric bursitis instead- that's a good thing cause it's just inflammation. Very painful but not dangerous.It was important to me that my doctor respond to my questions about the pain and that she was genuinely concerned that my mobility was being affected. If your doc isn't talking a lot to you, you can try a couple of things, maybe. Like kidding with him (as in "hello" if he doesn't answer) or being direct as in: when you go in have a pen and paper in your hand with a list of questions prepared. DO NOT put down your pen until the questions are answered! :-)
what a night. I was all ready for a great sleep (trying tonight without taking muscle relaxant) then my husband awoke- his moving awakened me, awakened the hip pain, blah blah blah- now I'm awake! boo hiss and my sweetie is back to gently snoring and I can't find my ear plugs. What a hoot! It's okay; I can nap tomorrow all I want. What I had to resist was what I used to do: I'd convince myself that since I was awake and since I was behind on my work, I'd tackle some household job. uhhhh-unnnnnn- no more of that trap!
Well, dear heart, I'd better try to find those ear plugs. I promise I'll try to find the lab-results stuff and post it tomorrow. It really does help if you know what they are looking at. I need to dig it out anyway cause my labs come back on Monday.
go easy girl-
jeri
Let me help remove one stumbling block: "the faith thing." Stand by- cause I am awake and talkative. :-) I bubble over sometimes and can't contain myself 'cause I KNOW that I couldn't get thru this mess without Jesus. I don't mean church or anything organized- that is something you come to seek on your own at His direction. I was down and out in fear in 1971- about to have breast biopsies for cancer when my twin babies were 4 mos old and I had 3 other children to raise. I was scared out of my wits at what would happen to those children if I had cancer. I read a book about the Bible and was led to ask Him to be real and personal to me. I had the greatest calm come over me- and honestly feared no longer what was about to happen. I knew that He was in control. Nonetheless, even tho I came thru just fine, I lived an awful life by His standards until about 4-5 yrs ago. I sudddenly heard Him call me to obey Him. I know it sounds goofy as all get out- but I was led back to being obedient to His word in the Bible. He has so richly blessed me with His protection and comforting. You see, in our weakness we see how perfect He is. It's not until we run out of ways to do things ourselves, unsuccessfully, that we begin to look away from ourselves and to Him. I can't do anything BUT share with anyone else who is hurting or confused or feeling very alone- that He alone can calm the storms by speaking. I have no idea why He allows this desease in my body. It really doesn't matter. I don't wish it on anyone else and He is with me every step of the way. I don't want to offend you or put you off or try to "convert" you- I just know what He promises all of us- His forgiveness, His truth, His comforting and His love. All we have to do is ask. He is what I cling onto when it's rough. Would your father want you to stay away 'cause some group of people had mad you feel guilty and ashamed? Not God, He's waiting to welcome you back into His loving embrace (in spite of the guilt-making humans) :-) He's where it's at! I promise- no more evangelizing!
As far as what everyone appears to have lots of: time to read. Nahhhhhhhhhhh. Well, actually I have a peach of a job that allows me to do just about what I want during slack-time, and on my shifts there's plenty of that. Besides, my kids are grown and live close by; if I need anything I can ask. My husband is wonderfully supportive and is retired. he has taken a major burden (the house) off my shoulders. So I have time to read books- and I'm a "fast skimmer."
Just reading what you wrote made me think instantly "Too much". It seems like you are trying to do (or doing) too much. I just learned about the FM this week- and that's what I am struggling with: not allowing enough priority for adequate rest. With all that is going on in my body, I don't allow for the tissues to heal naturally. It seems like there are always 10 more things to do & if I feel just a little bit better today I'd better tackle them before I feel any worse. Sound familiar? It's a trap- cause if you overdo, you lose precious ground that you have gained. I call all this opposite-world. Everything is opposite to the way we think it should be. Sorta like " If I am a good girl all this will be okay." Then we are trapped into thinking that we have control and if we get sicker then it's all our own fault." WRONG! There is a balance and I am beginning to feel that if we calm down and give up the panic, we will eventually begin to learn to sway with the tightrope and find the balancing easier.
You may never find a lot of time for reading- but while you enjoy your computer time- you may be learning and reading, too. It's hard to verify what someone tells you if you don't have any other sources to check it against. The other sources don't have to be books, tho- reputable medical and health foundation sites online are every bit as legitimate (maybe moreso) as the printed word. I'll printnout your last post and try to sort out the labs with the book I have and get back to you on them. There are a couple of tests that are good predictors of whether your kidneys are likely to be involved on down the line.
Like you, I have gained so much knowledge from these boards. I think the bond is that we are real and share experiences and our vocabulary is so accurate. The exposure to each other is so significant, because we are available and understanding, and encourage venting. Our medical team-players only have about 15 minutes to assist us. They do a great job, but these diseases require more personal support. That's how we function for each other.
I haven't noticed any side effects from plaquenil except positive ones- and they started about 3 wks after I began taking it. I, too, am very leary of the effects of prednisone, but I trust my rheumie that her first concern was to get me feeling better- and by that she meant pain-free. She accomplished that for a while. Now I have some criteria for judging whether I am better-or-worse each day.
Diagnosing this stuff early is a great benefit as the medication heads off further complications. heads-off, not prevents nor cures. And I believe that I can be in that 80-90% who don't have major organ involvement. someone has to be. Well, if not me, then hopefully someone I know. :-)
You mentioned hurting above your wrist. That reminded me that I had been having a lot of hip pain and was concerned because lupus as well as some of the meds can cause bone death (necrosis). The doc took my complaint seriously and had it xrayed. I have trocanteric bursitis instead- that's a good thing cause it's just inflammation. Very painful but not dangerous.It was important to me that my doctor respond to my questions about the pain and that she was genuinely concerned that my mobility was being affected. If your doc isn't talking a lot to you, you can try a couple of things, maybe. Like kidding with him (as in "hello" if he doesn't answer) or being direct as in: when you go in have a pen and paper in your hand with a list of questions prepared. DO NOT put down your pen until the questions are answered! :-)
what a night. I was all ready for a great sleep (trying tonight without taking muscle relaxant) then my husband awoke- his moving awakened me, awakened the hip pain, blah blah blah- now I'm awake! boo hiss and my sweetie is back to gently snoring and I can't find my ear plugs. What a hoot! It's okay; I can nap tomorrow all I want. What I had to resist was what I used to do: I'd convince myself that since I was awake and since I was behind on my work, I'd tackle some household job. uhhhh-unnnnnn- no more of that trap!
Well, dear heart, I'd better try to find those ear plugs. I promise I'll try to find the lab-results stuff and post it tomorrow. It really does help if you know what they are looking at. I need to dig it out anyway cause my labs come back on Monday.
go easy girl-
jeri
MnMetalMouth
02-24-2001, 04:35 PM
Hi Jeri and Ann...Sorry to butt in, but I had something to add about Sjogrens. I have secondary Sjogrens and suffer from the dry eyes and mouth. More importantly, my doc warned me that Sjogrens patients have a very high risk of Lymphoma. I think he said 60 or 80 times higher. So make sure to get any lumps or bumps cheched out right away! So Ann, are you getting snow or ice?? Snowed all night and now it is freezing raining with more snow on the way. Sounds like Sunday could be a blizzard. I love winter, but this one is getting to be a bit much!!! Take care... :)
Jeri
02-24-2001, 05:54 PM
Hi MMM!
Lucky us- we are having balmy winds and it's about 60+degrees. I better not gloat too much cause this kinda weather in feb means storms! Anyway- I have been enjoying having the door open most of the day.
Thanks for the update on sjogren's- I also have it secondary to everything else and NO ONE even hinted that the sjogrens was anything more than an inconvenience. In fact the only caution was over the medications causing eye problems. Hmmmmmmmmm, Needless to say, your alert is causing me to do a LOT more research. I have a lot to learn!
Just goes to prove that we are here, together, on this board for a reason: to uplist and assist each other.
Thanks for being here for us.
jeri
Lucky us- we are having balmy winds and it's about 60+degrees. I better not gloat too much cause this kinda weather in feb means storms! Anyway- I have been enjoying having the door open most of the day.
Thanks for the update on sjogren's- I also have it secondary to everything else and NO ONE even hinted that the sjogrens was anything more than an inconvenience. In fact the only caution was over the medications causing eye problems. Hmmmmmmmmm, Needless to say, your alert is causing me to do a LOT more research. I have a lot to learn!
Just goes to prove that we are here, together, on this board for a reason: to uplist and assist each other.
Thanks for being here for us.
jeri
Ann S
02-25-2001, 12:30 AM
Jeri, picturing your balmy breezes feels like a dream. It seems like a long time since we could open the doors, right MM? I feel a little more claustrophobic (sp?) since the Raynauds, otherwise this could be a snow to have fun in.
MM...as far as I'm concerned you're not butting in. With all our weather talk, we're lifting Jeri's spirits, right? We just had a little snow last night, nothing during the day today, but it's coming down really heavy now. Talked to my daughter in Burnsville around 1 p.m. and she said it was raining there. Radar looks like we're both in for it tonight. Just looked outside, it's awful. If I could play in the snow, I could've built a snow fort/tunnel in my back yard that I could've stood up in (not an exaggeration either). Tomorrow, I would be able to put a second story on it. I predict a major flood in my basement this spring!
Anyway, I think the plaquenil is the med my dr. said that when I start using it, I had to see the opthamologist on a regular basis cause of possible eye damage. No wander no one has had much success with these diseases, it's so hard to sort out the symptoms from the side effects & vice versa, along with trying to decide which is doing your body more damage.
MM...have you ever thought about having Rochester check you out?
Have either of you heard anything about a study that Dr. Robert Brodsky from Johns Hopkins did in 98? His success was really good.....many went into remission, some had less pain, and the worst that happened were that they stayed the same. I didn't understand exactly what he did, and I can't find anything about what he's done since.
Jeri, you sound like you have a really good family...that isn't just fate, most would feel it was an accomplishment.
Just rambling now, but this is kind of fun....having both friends, comforting mothers, and good medical advisors all rolled into one. Thanks, Ann
MM...as far as I'm concerned you're not butting in. With all our weather talk, we're lifting Jeri's spirits, right? We just had a little snow last night, nothing during the day today, but it's coming down really heavy now. Talked to my daughter in Burnsville around 1 p.m. and she said it was raining there. Radar looks like we're both in for it tonight. Just looked outside, it's awful. If I could play in the snow, I could've built a snow fort/tunnel in my back yard that I could've stood up in (not an exaggeration either). Tomorrow, I would be able to put a second story on it. I predict a major flood in my basement this spring!
Anyway, I think the plaquenil is the med my dr. said that when I start using it, I had to see the opthamologist on a regular basis cause of possible eye damage. No wander no one has had much success with these diseases, it's so hard to sort out the symptoms from the side effects & vice versa, along with trying to decide which is doing your body more damage.
MM...have you ever thought about having Rochester check you out?
Have either of you heard anything about a study that Dr. Robert Brodsky from Johns Hopkins did in 98? His success was really good.....many went into remission, some had less pain, and the worst that happened were that they stayed the same. I didn't understand exactly what he did, and I can't find anything about what he's done since.
Jeri, you sound like you have a really good family...that isn't just fate, most would feel it was an accomplishment.
Just rambling now, but this is kind of fun....having both friends, comforting mothers, and good medical advisors all rolled into one. Thanks, Ann
Jeri
02-25-2001, 04:19 PM
Hi gals, I did a search on Johns Hopkins and found Brodsky's oroginal research, but nothing more came up on is name- he's still on the faculty there. A search via medscape only showed this article (see below) and mention of stem-cell transplantation.
I'm glad that I'm on what I am on. It seems to be kicking in and in the whole scheme of what's available to treat this "ills"- there are still a lot left in the arsenal..
I hope I'm not violating any law by posting this, I could have sent the article to you via e-mail but didn't have y'all's addresses. I don't see the difference:
jeri
--------------------------------------------------------------------------------
December 14, 1998
For press inquiries only, please call (410) 955-6680.
Hopkins Researchers Develop New Therapy for Autoimmune Disorders such as Rheumatoid Arthritis and Lupus
Researchers at the Johns Hopkins Oncology Center used high doses of the chemotherapy drug cyclophosphamide alone to control previously untreatable forms of autoimmune disorders such as rheumatoid arthritis, lupus and hemolytic anemia.
Their findings are reported in the December 15, 1998 issue of Annals of Internal Medicine. Of eight patients treated in the study with stand-alone high dose cyclophosphamide, five reported complete remissions and two achieved and maintained partial remissions. Four patients treated from six months to more than a year ago remain disease free, and two patients, in partial remission, continue to improve after more than a year. In addition, all patients were able to decrease their doses of medication, and three patients have completely discontinued medications for their disease. These patients had not responded to disease therapies and suffered from recurrent infections, persistent pain and kidney problems.
Treatment for severe autoimmune diseases using high-dose cyclophosphamide followed by bone marrow or stem cell transplantation to repopulate the immune system destroyed by the drug treatment is being studied elsewhere. The new Hopkins research, funded by the National Institutes of Health, suggests that transplants are unnecessary. "Stem cells, the marrow cells that reconstitute the immune system, are resistant to the drug and will repopulate in the marrow, without the need for transplantation," says Robert Brodsky, M.D., assistant professor of oncology and medicine and lead author of the study. "High-dose cyclophosphamide, without stem cell or bone marrow reinfusion, appears to be safer for the patient and avoids reinfusion of diseased immune cells," adds Brodsky, an American Society of Hematology Junior Faculty Scholar.
Hopkins scientists believe the cyclophosphamide works by reprogramming the immune system. "Immunity is learned' not inherited," explains Richard Jones, M.D., associate professor of oncology and director of Bone Marrow Transplantation at the Johns Hopkins Oncology Center. "We acquire immunity through vaccinations and exposure to organisms which teach immune cells to recognize and attack foreign bodies." In people with autoimmune disorders, the immune system attacks its own tissues and organs and must be re-taught to differentiate between the body's own cells and foreign attackers. "This therapy is analogous to rebooting a computer--you wipe out the old information, then allow it to re-learn. The immune system that returns should function normally," says Jones.
While the researchers are optimistic about these results, they caution that additional research and a larger number of patients are necessary to confirm these findings. They are now expanding the study to include additional patients with severe autoimmune disorders.
In addition to Jones and Brodsky, other research participants included Michelle Petri, M.D., M.P.H., B. Douglas Smith, M.D., Eric J. Seifter, M.D., Jerry L. Spivak, M.D., and Chi V. Dang, M.D., Ph.D., of Hopkins, and Michael Styler, M.D. and Isadore Brodsky, M.D., of Hahnemann University
PS WE ARE PLAYING OUTSIDE TODAY, IT'S GEORGEOUS! ABT 65 AND SUNNY!
I'm glad that I'm on what I am on. It seems to be kicking in and in the whole scheme of what's available to treat this "ills"- there are still a lot left in the arsenal..
I hope I'm not violating any law by posting this, I could have sent the article to you via e-mail but didn't have y'all's addresses. I don't see the difference:
jeri
--------------------------------------------------------------------------------
December 14, 1998
For press inquiries only, please call (410) 955-6680.
Hopkins Researchers Develop New Therapy for Autoimmune Disorders such as Rheumatoid Arthritis and Lupus
Researchers at the Johns Hopkins Oncology Center used high doses of the chemotherapy drug cyclophosphamide alone to control previously untreatable forms of autoimmune disorders such as rheumatoid arthritis, lupus and hemolytic anemia.
Their findings are reported in the December 15, 1998 issue of Annals of Internal Medicine. Of eight patients treated in the study with stand-alone high dose cyclophosphamide, five reported complete remissions and two achieved and maintained partial remissions. Four patients treated from six months to more than a year ago remain disease free, and two patients, in partial remission, continue to improve after more than a year. In addition, all patients were able to decrease their doses of medication, and three patients have completely discontinued medications for their disease. These patients had not responded to disease therapies and suffered from recurrent infections, persistent pain and kidney problems.
Treatment for severe autoimmune diseases using high-dose cyclophosphamide followed by bone marrow or stem cell transplantation to repopulate the immune system destroyed by the drug treatment is being studied elsewhere. The new Hopkins research, funded by the National Institutes of Health, suggests that transplants are unnecessary. "Stem cells, the marrow cells that reconstitute the immune system, are resistant to the drug and will repopulate in the marrow, without the need for transplantation," says Robert Brodsky, M.D., assistant professor of oncology and medicine and lead author of the study. "High-dose cyclophosphamide, without stem cell or bone marrow reinfusion, appears to be safer for the patient and avoids reinfusion of diseased immune cells," adds Brodsky, an American Society of Hematology Junior Faculty Scholar.
Hopkins scientists believe the cyclophosphamide works by reprogramming the immune system. "Immunity is learned' not inherited," explains Richard Jones, M.D., associate professor of oncology and director of Bone Marrow Transplantation at the Johns Hopkins Oncology Center. "We acquire immunity through vaccinations and exposure to organisms which teach immune cells to recognize and attack foreign bodies." In people with autoimmune disorders, the immune system attacks its own tissues and organs and must be re-taught to differentiate between the body's own cells and foreign attackers. "This therapy is analogous to rebooting a computer--you wipe out the old information, then allow it to re-learn. The immune system that returns should function normally," says Jones.
While the researchers are optimistic about these results, they caution that additional research and a larger number of patients are necessary to confirm these findings. They are now expanding the study to include additional patients with severe autoimmune disorders.
In addition to Jones and Brodsky, other research participants included Michelle Petri, M.D., M.P.H., B. Douglas Smith, M.D., Eric J. Seifter, M.D., Jerry L. Spivak, M.D., and Chi V. Dang, M.D., Ph.D., of Hopkins, and Michael Styler, M.D. and Isadore Brodsky, M.D., of Hahnemann University
PS WE ARE PLAYING OUTSIDE TODAY, IT'S GEORGEOUS! ABT 65 AND SUNNY!
Ann S
02-25-2001, 04:52 PM
Jeri,
Thanks for all the info - sounds promising!
Hope you hit a homer for us.
Don't you react to the sun?
Ann
Thanks for all the info - sounds promising!
Hope you hit a homer for us.
Don't you react to the sun?
Ann
Jeri
02-25-2001, 05:10 PM
YES!! i do react to the sun. I took a short walk thru our woods and sat on a planter in the shade and watched two of our granchildren play with the adults on the tree swing. Took another walk to see where a few of the daffodils had sprouted and then walked back inside. Enough exercise for today. :-)
I really balk at the no-sun stuff, as our family has always gone to beach for family vacations. We modified my sun exposure last year, but it was still too much sun. Don't know what we'll do this year.
Actually, your talk of snow beings back very fond childhood memories of snow tunnels and igloos and back-yard ice rinks.
remembering....
jeri
I really balk at the no-sun stuff, as our family has always gone to beach for family vacations. We modified my sun exposure last year, but it was still too much sun. Don't know what we'll do this year.
Actually, your talk of snow beings back very fond childhood memories of snow tunnels and igloos and back-yard ice rinks.
remembering....
jeri
Ann S
02-25-2001, 06:46 PM
Hi guys,
Had a lot of time for research today cause of the blizzard. Found tons of stuff(16 pgs.) when I did a google.com search on "cyclophosphamide" the drug used in that study. http://www.google.com/search?q=cyclophosphamide&hl=en&lr=&safe=off&start=10&sa=N
To sum it up: It's a cancer drug, used in lower doses for Lupus. The side effects are similar to chemotherapy i.e.hair loss, nausea, etc. It really shows good results, but is mainly used in severe cases where the Lupus is affecting major organs. The side effects seem too severe for use in milder cases. I think it's just a start.....maybe they can fine-tune it with time!
It's also being tested for use on people with Rheumatoid Arthritis. So far with RA, the concensus is that there are other drugs that are effective without the severe side effects, i.e. meth...(sp?) The one Jeri's taking. Wow! Isn't it amazing what you luck out finding sometimes. I think my next project is to search out and buy a newer computer. It will cut down on my frustration level and save me lots of time. Talk to you soon, Ann
Had a lot of time for research today cause of the blizzard. Found tons of stuff(16 pgs.) when I did a google.com search on "cyclophosphamide" the drug used in that study. http://www.google.com/search?q=cyclophosphamide&hl=en&lr=&safe=off&start=10&sa=N
To sum it up: It's a cancer drug, used in lower doses for Lupus. The side effects are similar to chemotherapy i.e.hair loss, nausea, etc. It really shows good results, but is mainly used in severe cases where the Lupus is affecting major organs. The side effects seem too severe for use in milder cases. I think it's just a start.....maybe they can fine-tune it with time!
It's also being tested for use on people with Rheumatoid Arthritis. So far with RA, the concensus is that there are other drugs that are effective without the severe side effects, i.e. meth...(sp?) The one Jeri's taking. Wow! Isn't it amazing what you luck out finding sometimes. I think my next project is to search out and buy a newer computer. It will cut down on my frustration level and save me lots of time. Talk to you soon, Ann
Jeri
02-25-2001, 07:31 PM
Hello again
Isn't it comforting to know that there is still research on-going?
I did some of the orginal national cancer institute contract studies on methotrexate back in the 60's at a research lab I worked for. Little did I know that eons later, I'd be taking the same drug. Those little mice didn't die in vain! :-)
The drug we have been exploring today does offer some real hope for those people who have run out of options.
I am still very leary about the balancing act required to fine-tune the treatment vs negative side effects vs the original problem. I am so glad that my rheumatologist is very personal and VERY accessible. We've all had our share, I'm sure, over the years (before we got a REAL dx) of doctors who ignored or minimalized our symptoms. With these complex diseases, we deserve the very best to meet the challenge. If you don't have a good one, drop that uncooperative or indifferent team member and get another one who will talk with you, who listens carefully and who cares about you as a person.
ann- do you have your lab values/results? I f you can tell me what they ran & what the numbers are, I can compare those with normal range. Understand, tho, that different labs sometimes go by different values. I get mine faxed to me whenever the doctor calls to give me the results. My lab report forms have the normal values on them. Someone suggested that I keep my copies in a small notebook so that I have my lab records available whenever I need them for either comparison or when I go to my internist for diabetes checks, etc.
jeri
Isn't it comforting to know that there is still research on-going?
I did some of the orginal national cancer institute contract studies on methotrexate back in the 60's at a research lab I worked for. Little did I know that eons later, I'd be taking the same drug. Those little mice didn't die in vain! :-)
The drug we have been exploring today does offer some real hope for those people who have run out of options.
I am still very leary about the balancing act required to fine-tune the treatment vs negative side effects vs the original problem. I am so glad that my rheumatologist is very personal and VERY accessible. We've all had our share, I'm sure, over the years (before we got a REAL dx) of doctors who ignored or minimalized our symptoms. With these complex diseases, we deserve the very best to meet the challenge. If you don't have a good one, drop that uncooperative or indifferent team member and get another one who will talk with you, who listens carefully and who cares about you as a person.
ann- do you have your lab values/results? I f you can tell me what they ran & what the numbers are, I can compare those with normal range. Understand, tho, that different labs sometimes go by different values. I get mine faxed to me whenever the doctor calls to give me the results. My lab report forms have the normal values on them. Someone suggested that I keep my copies in a small notebook so that I have my lab records available whenever I need them for either comparison or when I go to my internist for diabetes checks, etc.
jeri
Ann S
02-26-2001, 10:34 PM
Jeri,
That's funny you mentioned that about the copies. When I was trying to figure out myself what I had, someone suggested having my thyroid checked (this was before the muscle & joint pain became so constant), and said to be sure to get copies of all lab tests. I remembered every time, except my last appt. If you don't ask right away, sometimes they make you go through records with a formal request. I'm going to call them tomorrow and see. Hope the week goes fast for you, Ann
That's funny you mentioned that about the copies. When I was trying to figure out myself what I had, someone suggested having my thyroid checked (this was before the muscle & joint pain became so constant), and said to be sure to get copies of all lab tests. I remembered every time, except my last appt. If you don't ask right away, sometimes they make you go through records with a formal request. I'm going to call them tomorrow and see. Hope the week goes fast for you, Ann
FLBucki
07-25-2005, 02:48 PM
Wow, some of these hit home. I concur with the other poster regarding prednisone & plaquenil. These got my daughter in line lickety split! As soon as she was pulsed in the hospital & had the pred administered, she was better in days. She was a trainwreck upon admittance. The plaquenil takes about 6 months to kick-in full strength. You won't notice much until then. Back to the pred, my daughter started at 20mgs, now down to alternating a 12.5/10 mgs a day approach. The alternating works better than a straight jump down to the lower level.
The chemo zapped those kidneys after the 2nd blast. Feeling much better after that, but still did 6 to make sure.
After that, it has been slow but steady improvement. Still affected, but under control. And I intend to keep it that way, the mommy with the eagle eye!
The chemo zapped those kidneys after the 2nd blast. Feeling much better after that, but still did 6 to make sure.
After that, it has been slow but steady improvement. Still affected, but under control. And I intend to keep it that way, the mommy with the eagle eye!
FLBucki
07-25-2005, 02:55 PM
Cyclophosphamide is cytoxan, a cancer drug used to stop kidney involvement in lupus patients. Thing worked for us, as after 2 doses, kidney was working well! Continued on for the full 6 treatments. Then, went into maintence phase when she switched to Cellcept.
Many other drugs have come out since this post, Cellcept one of them, Rituximab another. Another one is brewing, currently in Phase 3 trials I believe. Let's keep pushing Congress & the drug companies for these, as well as research of all kinds. We deserve these, people!
Many other drugs have come out since this post, Cellcept one of them, Rituximab another. Another one is brewing, currently in Phase 3 trials I believe. Let's keep pushing Congress & the drug companies for these, as well as research of all kinds. We deserve these, people!